How I Learned to Manage Anemia: what Worked for Me

I was about 8 years old when I first started feeling symptoms of iron deficiency. Symptoms included fatigue, insomnia, restless legs, brittle nails, cold hands and feet, dizziness, pale skin, and a racing heart rate. Sometimes, the anemia became debilitating because the exhaustion and fatigue were just so severe.

It took several years for me to become comfortable managing anemia. My journey included multiple diagnoses, experimenting with various treatment plans, and even surgery.

With time, patience, self-advocacy, and the help of loved ones, I feel I arrived at a good balance of health and happiness. This is my story.

Getting a diagnosis

It was my mother who first noticed my lack of energy compared to other 8-year- olds.

Most days, I would come home from school and have a nap instead of having playdates with friends. My frail, pale appearance blended in with the walls in my home. It was a clear sign that something wasn’t right.

My mother brought me to see our family doctor. I had blood work done which showed that my iron was significantly low, especially for someone my age. I was sent home with a prescription for daily iron pills.

Those iron pills were supposed to get me back on my feet and feeling like myself again.

But that wasn’t the case. My energy stayed low, and over time, other symptoms began to appear, such as severe abdominal pain. My mother could tell that something was still not right.

Seeking a second opinion

About a year after my iron-deficiency diagnosis, my mother took me to a gastroenterologist at a pediatric hospital for a second opinion, along with more tests.

After all the symptoms and waiting, I was diagnosed with Crohn’s disease, an inflammatory bowel disease. The iron deficiency was one of several issues that turned out to be symptoms of Crohn’s disease.

Once I was diagnosed with Crohn’s disease, I began proper treatment with different types of medication. My iron levels started getting back to normal and I started thriving as a teenager.

When anemia became debilitating

By the time I reached young adulthood, I had experienced two bowel resections due to Crohn’s disease. Shortly after the second resection, I started to experience spells of extreme dizziness. Some days, I couldn’t get out of bed because it felt like the whole room was spinning.

It didn’t cross my mind that my symptoms could possibly be related to iron deficiency. I also hadn’t considered that I had lost a large portion of my bowel, where iron is absorbed in the body. After a week of severe dizzy spells that left me lying on the bathroom floor, I contacted my doctor.

To my surprise, the bloodwork revealed that my iron levels had fallen tremendously. This is when my doctors told me that I was anemic. They were very concerned and told me that I needed immediate medical treatment.

Finding a treatment plan that works

I started receiving treatments to get my iron levels back to normal. Crohn’s disease was the primary cause of my iron deficiency and malabsorption. With this in mind, my team of doctors decided that intravenous iron infusions would be my best treatment option.

It may sound scary, but it’s become part of my regular routine. At the beginning, I had to go into the infusion clinic once a week to receive them. The whole process would take about 3 to 3 1/2 hours.

For me, the side effects included mild headaches, fatigue, and a metallic taste in my mouth. It was sometimes difficult to cope, but the results over time were definitely worth it. It took about 4 to 6 weeks of weekly infusions for my body to adjust to treatment and to get my iron levels back to normal.

After some trial-and-error in figuring out what worked for my body, I settled on iron infusions every 3 to 4 months. With this treatment plan, my iron levels stayed stable, no longer dropping dramatically. The new schedule not only helped to keep my energy levels up, but allowed me more time to do the things I love.

Ever since I started receiving regular iron infusions, it’s been so much easier to manage anemia and navigate through the busyness of everyday life. I enjoy a fairly busy lifestyle as a kindergarten teacher and I enjoy walking on hiking trails on the weekends. Having the energy to do the things I love is very important to me, and it finally feels like I’m able to do that.

The takeaway

Having been a patient for 20 years, I’ve learned the importance of advocating for my health and well-being. Navigating through life with iron deficiency can be challenging and exhausting, but a treatment plan made for me and my body has given me a chance to lead a normal life. That’s made all the difference.

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